Patient Voices: l’esperienza partecipativa dei cittadini-utenti e pazienti attraverso l’implementazione dei PRMs in ambito oncologico

Journal title SALUTE E SOCIETÀ
Author/s Linda Lombi, Michele Marzulli, Sara Nanetti, Sara Alfieri, Cinzia Brunelli
Publishing Year 2022 Issue 2022/1
Language Italian Pages 17 P. 80-96 File size 213 KB
DOI 10.3280/SES2022-001006
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Despite convincing evidence that routine patient reported outcomes and experience measure-ments (PRMs) can improve symptom control, patient well-being and the performance of healthcare systems, PRMs are not commonly used in cancer care, due to barriers at various level. Our project is aimed at achieving a stepwise integration of electronic PRMs (ePRMs) assessment into routine cancer care. The feasibility study presented in our paper is aimed at assessing the knowledge, use and attitudes toward PRMs in a comprehensive cancer centre and explore how ePRMs can contribute to patients participation along the care pathway. We will discuss the findings of two focus group administered (the first with patients, the second one with health professionals). Our results indicate an acceptable level of knowledge of com-mon PRMs tools and a positive attitude towards the routine implementation of ePRMs in the oncology area. Nonetheless, patients and health professionals show some divergences in the way of interpreting PRMs as instruments of participation. From the point of view of patients, PRMs represent a tool above all to report their health status, needs and their level of satisfac-tion, while for clinicians it represents an instrument to collect more information useful for the decision-making process.

Keywords: participatory medicine; PROMs; PREMs; patient-centered medicine; cancer; citi-zens’ participation.

  1. Basch E. (2017). Patient-reported outcomes - harnessing patients’ voices to improve clinical care. N Engl J Med., 376(2), 105-8.
  2. Basch E., Abernethy A.P. (2011). Supporting clinical practice decisions with real-time patient-reported outcomes. J Clin Oncol, 29(8), 954–6. DOI: 10.1200/JCO.2010.33.266
  3. Beattie M., Murphy D.J., Atherton I., Lauder W. (2015). Instruments to measure pa-tient experience of healthcare quality in hospitals: a systematic review. Syst Rev, 4(1), 97.
  4. Boyce M.B., Browne J.P., Greenhalgh J. (2014). The experiences of professionals with using information from patient-reported outcome measures to I prove the quality of healthcare: a systematic review of qualitative research. BMJ Qual Saf, 23(6): 508-18.
  5. Brunelli C., Borreani C., Caraceni A., Roli A., Bellazzi M., Lombi L. et al. (2020). Patient Voices, a project for the integration of the systematic assessment of patient reported outcomes and experiences within a comprehensive cancer center: a protocol for a mixed method feasibility study. Health and quality of life outcomes, 18(1), 252.
  6. Cervia S. (2014). La partecipazione dei cittadini sanità. Italia ed Europa a confronto. Milano: FrancoAngeli.
  7. Corner J., Wagland R., Glaser A., et al. (2013). Qualitative analysis of patients’ feedback from a PROMs survey of cancer patients in England. BMJ, 3:e002316.
  8. Corrao S. (2005). Il Focus group. Milano: FrancoAngeli.
  9. Creswell J., Plano Clark V. (2017). Designing and conducting mixed method research, vol. 201. 2nd ed. Thousand Oaks: Sage.
  10. Fleischmann M., Vaughan B. (2018). The challenges and opportunities of using patient reported outcome measures (PROMs) in clinical practice. International Journal of Osteopathic Medicine, 28, 56-61.
  11. Giarelli G., Lombi L., Cervia S. (2020). Associazionismo di cittadinanza e co-produzione della cura. In: Cardano M., Giarelli G., Vicarelli G., a cura di, Sociologia della salute e della medicina, Bologna: Il Mulino.
  12. Greenhalgh J. (2009). The applications of PROs in clinical practice: what are they, do they work, and why? Qual Life Res. 2009;18(1):115–23.
  13. Hirschman A. (1970). Exit, Voice and Loyalty: Responses to Decline in Firms, Organizations and States. Cambridge: Harvard University Press.
  14. Hunter A., Facey K., Thomas V., Haerry D., Warner K., Klingmann I., May M., See W. (2018). EUPATI Guidance for Patient Involvement, Medicines Research and Development: Health Technology Assessment. Front. Med, 5:231.
  15. Ingrosso M. (2018), La cura complessa e collaborativa. Ricerche e proposte di Sociologia della cura. Canterano: Aracne Editrice.
  16. Jagsi R., Chiang A., Blase N. Polite, Bruno C., McNiff K., Amy P. Abernethy, Zon R., Loehrer P.J. (2017). Qualitative Analysis of Practicing Oncologists’ Attitudes and Experiences Regarding Collection of Patient-Reported Outcomes, American Society of Clinical Oncology, 9(6), e290-e297. DOI: 10.1200/JOP.2012.00082
  17. Jensen R.E., Snyder C.F., Abernethy A.P., Basch E., Potosky A.L., Roberts A.C., et al. (2013). Review of electronic patient-reported outcomes systems used in cancer clinical care. J Oncol Pract., 10(4), 215–22. DOI: 10.1200/JOP.2013.00106
  18. Kickbusch I., et al. (eds) (2013). Health literacy. The solid facts. World Health organization – Europe.
  19. Kickbusch I., Maag D. (2005). Health literacy: Towards an active health citizenship. In: Sprenger M., editors, Public Health in Österreich und Europa. Festschrift anlässlich der Emeritierung von Univ.-Prof. Dr. med. Horst Richard Noack PhD. Lengreich: Papst Science Publishers.
  20. Kotronoulas G., Kearney N., Maguire R., Harrow A., Di Domenico D., Croy S., et al. (2014). What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. J Clin Oncol., 32(14): 1480–501. DOI: 10.1200/JCO.2013.53.594
  21. Lagendijk M., Van Egdom L.S.E., Richel C., Van Leeuwen N., Verhoef C., Lingsma H.F., Koppert L.B. (2018). Patient reported outcome measures in breast cancer patients. European Journal of Surgical Oncology, 44(7), 963-968.
  22. Male L., Noble A., Atkinson J., Marson T. (2017). Measuring patient experience: a systematic review to evaluate psychometric properties of patient reported experience measures (PREMs) for emergency care service provision. International Journal for Quality in Health Care, 29(3), 314-326.
  23. Nelson E.C., Eftimovska E., Lind C., Hager A., Wasson J. H., Lindblad S. (2015). Patient reported outcome measures in practice. Bmj, 350.
  24. Nyman M.H., Frank C, Langius-Eklöf A., Blomberg K., Sundberg K., Wengström Y. (2017). Patients’ Perspective on Participation in Care With or Without the Support of a Smartphone App During Radiotherapy for Prostate Cancer: Qualitative Study. JMIR Mhealth Uhealth, 5(7):e107.
  25. Olde R., Schoon Y., Westert G.P. (2018). Using Patient Reported Outcomes Measures to Promote Integrated Care. International Journal of Integrated Care, 18, 2.
  26. Onwuegbuzie A.J., Dickinson W.B., Leech N.L., Zoran A.G. (2009). A qualitative framework for collecting and analyzing data in focus group research. International Journal of Qualitative Methods, 8(3), 1-21. DOI: 10.1177/16094069090080030
  27. Oprandi N.C. (2000). Focus group. Padova: Emme&Erre libri.
  28. Rabeharisoa V., Callon M. (2002). L'engagement des associations de malades dans la recherche. Revue internationale des sciences sociales, (1), 65-73. DOI : 10.3917/riss.171.0065
  29. Santana M.J., Feeny D. (2014). Framework to assess the effects of using patient-reported outcome measures in chronic care management. Quality of Life Re-search, 23(5):1505-1513.
  30. Snyder C.F., Jensen R.R., Orion Courtin S.S., Wu A.W. (2009). PatientViewpoint: a website for patient-reported outcomes assessment. Quality of Life Research, 18, 793–800. DOI 10.1007/s11136-009-9497-8
  31. Strong L.E. (2015). The past, present, and future of patient-reported outcomes in oncology. American Society of Clinical Oncology Educational Book, 35(1), e616-e620.
  32. Vicarelli G., a cura di, (2016). Oltre il coinvolgimento. L’attivazione del cittadino nelle nuove configurazioni di benessere. Bologna: il Mulino.
  33. Weldring T., Smith S.M. (2013). Patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs). Health Serv Insights, 6, 61–8. DOI: 10.4137/HSI.S1109
  34. Wilson R. (2018). Patient led PROMs must take centre stage in cancer research. Research Involvement and Engagement, 4(1), 1-8.

Linda Lombi, Michele Marzulli, Sara Nanetti, Sara Alfieri, Cinzia Brunelli, Patient Voices: l’esperienza partecipativa dei cittadini-utenti e pazienti attraverso l’implementazione dei PRMs in ambito oncologico in "SALUTE E SOCIETÀ" 1/2022, pp 80-96, DOI: 10.3280/SES2022-001006